‘100 Day Tool Kit’ LIVE Facebook Conversation

Today’s chat will focus on supporting families whose child has been recently diagnosed with autism. Most parents wonder: What do I do next? Where can I learn about the diagnosis? How will this affect other family members? Today, we want to help answer these types of questions. We expect to get more questions than we are able to answer, if you still have questions after the chat, please contact the Autism Response Team at 888-288-4762. Thank you for your participation in today’s chat!

5:09

Comment From Jennifer

Should a child be on an IEP if they have aspergers?

5:09

Hi Jennifer!

5:10

Yes, every child who has developmental concerns should have an IEP involving assessment that determine the child’s strengths and weaknesses

5:10

From there recommendations can be made to support the child in an educational program

5:11

Comment From Guest

My child is being tested for Autism…He is 2 1/2. What should I expect with the tests?

5:11

Hello Guest

5:12

Good diagnostic assessment treat strengths and weaknesses including language, cognition and other skills

5:12

This will be very important in setting goals and intervention plans

5:12

Comment From Guest

my grandson is almost 3 and I’m sure is autistic yet his parents won’t acknowledge it at all!! He needs help

5:12

Hi there!

5:13

This is a very common concern of grandparents

5:13

Sometimes it is difficult to know how to approach the parents so that they are open to taking the next steps

5:14

One approach is to recommend to the parents to get an evaluation

5:14

If there isn’t anything there, they can let it be. But if there is something, the child will benefit from early intervention

5:14

It might be good to suggest to them that you will accompany them to the assessment. The more support the better!

5:15

It is also good to give them time to process, but not TOO much time where the child loses the benefit of early intervention

5:15

Comment From Jesse

My neice has Autism and Im wondering will she ever be able to function in the world when she gets older?

5:15

Hi Jesse

5:15

YES!!!!!!!!!!!!!!

5:15

It is well known that all children with autism make developmental progress

5:16

In terms of how much or how can not always be sure. It is up to the family to make sure the child gets high quality intervention and is in the correct setting. The more support the child gets, the better the outcome.

5:17

Comment From Traci

I have sent 2 messages and they never show up

5:17

Hi Traci!

5:17

We are trying our best to answer everyone!

5:17

We are so happy that you are all here and asking questions

5:17

Comment From Sandy

We’ve just been diagnosed yesterday. Our 5 year old son has ADHD and PDD-NOS. Our concern right now is that every resource around here has a 2-4 month wait period. I’m wondering what we can do now before the socialization groups are accessed.

You may want to ask the professionals who evaluated your son what you can do at home in the meantime

5:19

The more the parents are involved in intervention, the better the outcome

5:19

Stress to the professionals that you need training on how best to intervene

5:19

Comment From Brandi

HELP! Trying to decide between ABA therapy and floor time therapy. Pros and cons???

5:19

Hi Brandi!

5:20

In this case, you must ask, in what therapy will the child make the most progress?

5:20

Again, this comes out of good assessments in finding what the child’s strengths are

5:20

Based on that you should be able to pick the appropriate intervention that will garner the best outcome

5:20

Comment From Jennifer S

We are about a month past our First 100 days and I wanted to thank you for our First 100 Days Tool Kit. It is priceless and an amazing resource. I carry it with me everywhere just to show people how amazing Autism Speaks is! Its a great way to get people excited about the walk, it shows where the money goes!

5:21

Hi Jennifer!

5:21

Thank you SO very much!

5:21

Our Mission At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.

5:22

We want that kit in the hands of every parent at no cost

5:22

Families can call 888-288-4762 to get a hard copy of the kit

5:22

We love how valuable the kit was for you

5:23

Comment From Cynthia

How can I explain my 5 year old that his brother has autism??

5:23

hi Cynthia

5:23

It is very important that parents explain to siblings that their brother or sister has autism

5:23

It is important to spend time talking with them and explaining what it means

5:24

It is also important to listen to their concerns without judgment

5:24

It is important that you establish the groundwork for an open communication

5:24

Let them know that is is okay to ask any questions and you will be there for them

5:24

The hard part is finding out what age appropriate terms you should use

Hi everyone! Our 3 year old was diagnosed with High Functioning Autism at 2 years and, even before then, we knew something was different due to several milestones he was not making. We immediately began Early Intervention, At-Home Teaching and Training and now, because of our great community-based EI, OT and ST organizations, Artie is doing fantastic! He has made so much progress and is even enrolled in an ELP class and has fully integrated with Mainstream Students! We are SO proud of him! I cannot emphasize enough how important Early Intervention is and how important it is to work with your child at home!

5:26

Hi Emilio

5:26

I cannot emphasize enough how important early intervention is and involving parents.

5:26

THEY ARE KEYS TO SUCCESS!

5:26

Thank you for inspiring other parents with your successes

5:27

Comment From Patty

What type of doctor is most qualified to make a diagnosis? Have been to 2 neurologists and still not completely comfortable w/their diagnosis.

5:27

Hi Patty

5:28

Starting with your pediatrician, you should be able to get a referral to a developmental pediatrician, neurologist, or psychologist

5:28

Because autism is a behavioral disorder, it is diagnosed through observation

5:28

and a careful history of the child

5:29

It is important to get a second opinion if you have additional questions about the diagnosis

5:29

There is no ‘one siz fits all” for autism spectrum disorders

5:30

Different professionals can see the child differently

5:30

Again, another reason to have more than one opinion.

5:30

Also keep in mind that no one knows your child better than you!

5:31

it is important to bring a support person with you to the evaluation to be sure you are hearing the same information

5:32

Then you can discuss this with the support person after the session. It can be very overwhelming and hard to absorb

5:32

Comment From Marilyn

Hi my Daughter is 8 years and she just been diagnostic with autism

5:32

Hi Marilyn

5:33

Although this may considered a late diagnosis, you are welcomed to call and get the 100 Day Kit

1. About Autism- what to expect, define autism, what causes autism, prevalence2. You, Your Family & Autism- your family- addresses the family’s reaction to their child getting diagnosis, what you and extended family can do

4. Treating Autism- different approaches to treatment, How is autism treated

5. Making It Happen-assembling your team, books ad websites
Appendix:
Action Plan for Next 100 days
Autism Safety Kit
Useful Forms
Glossary
Your local resources- Resources form RG: includes local resources: State Info, Schools, Waivers, Local Autism Orgs, AS Communities

6:00

In addition, another great resource is the Autism Video Glossary

6:01

Online video glossary to help you identify the early signs autism I young children
Glossary contains 150 video clips, available free of charge. It helps to understand words and terms used to describe autism. It also showw examples of social reciprocity, Joint attention, Sensory defensiveness

After reading everyone’s comments I am wondering how you all got such detailed diagnosis! My 5 year old son was recently diagnosed and our Neurologist just wrote “this child has high functioning autism and will require speech therepy and occupational therepies as well as special placement in school”.

Thats all he said, then pulled out his perscription pad and asked us how WE wanted to go about treatment! Thank god for Autism Speaks and their 100 day kit or I wouldn’t know ANYTHING about my son’s condition!

To Tina Orsino – we got the same response at Dartmouth Hanover – our son was 8 years old- they gave us packets of information including autism speaks 100 day kit – and the rest was up to us – it’s been exhausting road but follow the kit – keep calling – keep doing what they suggest – it will come together – good luck –

This conversation is awesome. It is indeed nice to record a good conversation so that you can recall it every time you want to remember it. Do Facebook have a feature that could record chat conversation?